What do you know now

I made it into Kathryn Soper's booklet Who else did? Now how to get a copy?

Dear Parents,

Thank you for responding to the question, "What do you know now aboutparenting a child with Down syndrome that you wish you'd known from thestart?" I've compiled your responses into a booklet which will bedistributed at the New Parents' Survival workshop at the NDSC convention inBoston on July 12.

I've edited nearly all of the responses for one reason or another. Some werelonger than the 50-word limit. Many had common phrasing that becamerepetitious when all the quotes were compiled (for example, nearly half ofyou mentioned unconditional love), so I removed the repetitious parts andretained the unique elements of the response. A few had phrases that werepotentially confusing for new parents. I know it's no fun to be edited, butplease understand that I needed to keep this booklet short, fresh, andclear. (If you have strong concerns about the way your response was edited,let me know.)

Thank you again for taking the time to share your experiences. I was deeplytouched by your words, and I know the attendees of the convention workshopwill be strengthened and inspired as they feel the joy that permeates thebooklet.

Kathryn Soper

p.s. You'll notice little "v" marks separating most of the responses. Theplaces where the mark is missing indicate page breaks in the booklet.

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What Parents Wish They'd Known

This booklet is a collection of thoughts from parents ofchildren with Down syndrome, who responded to this question:

What do you know now that you wish you'd known from the start?

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I wish I'd known that it wasn't the end of the world.

--Joseph, dad to Janna (3 years)

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I wish I'd known Down syndrome does NOT make being my son's mommy,

or loving him, difficult or different.

--Kathy, mom to PJ (8 ½ months)

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I wished I'd known just how much like a "typical" newborn my baby would looklikewhen she arrived. I was a bit scared and feared the unknown, but waspleasantly surprised:Ten fingers, ten toes, two eyes, two ears, a mouth and a nose . . .PERFECTION.

--Robyn, mom to Amarli (7 months)

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I wish I'd known to listen more and assume less.

--Chris, mom to Stevie (3 years)

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I wish I'd known that I could be the best advocate for my child.I didn't even know what the word meant, but I know now that I have noproblemsstanding up for Hope, and this has made me better at standing up for all mychildren.

--Debra, mom to Hope (4 years)

I wish I'd known how much having a child with a disability in my lifewould change the person that I am.

--Robert, dad to Hope (4 years)

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I wish I'd known that I would say and feel so often, "You're so smart!" or"You are the cutest kidin the whole world!" I wish I'd known I would use words like "sparkling,""vivacious," and"infectious laughter" when describing my child. I underestimated her.

--Nancy, mom to Gabriella (3 years)

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I wish I'd known how very joyful and in love I would be every second ofevery day.When my son was born, I worried, can I do this? I cherished that worrybecause it meant hiswas a life worth worrying about. I'm glad I know now that I don't have toworry.

--Kitty, mom to Nathanael (2 years)

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I wish I'd known that my daughter would be so able. To clean her own room.To charm grown men.To plant the garden with me. To play dress-up with other little girls. Toread and write.To be a friend that cares and shares. She is so able.

--Jeni, mom to Joy Daisy (6 years)

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I wish I'd known that my baby wasn't going to die. We were left with so manyunanswered questions and I thought for sure that it meant she would diewithin hours.

--Renee, mom to Kennedy (4 years)

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I wish I'd known what a wonderful teacher my older son would be.He is Owen's inspiration for everything—walking, talking, playing, climbing,eating, etc.Jason treats Owen like a kid, which is exactly what Owen is.

--Tricia, mom to Owen (2 years)

I wish I'd known that my son would develop a personality like any otherchild.I spent so much time wishing his babyhood away wanting to know what he wasgoingto be like. I wish I had relaxed and enjoyed the sweet baby I had.

--Ann, mom to John (5 years)

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I wish I'd known that this unexpected journey that began 4 years ago wouldnot be one of sadness,but of unspeakable joy, filled with more love and pride than I ever thoughtpossible.

Shirley, grandmother to Aleena (4 years)

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I wish I'd known . . .Not everything I read would happen to my child.I would love her more than anything else on Earth.Her hugs and kisses are real, from her heart.She is just like any other kid.She would make me a better person.Her laughs are the best music.

--Jennifer, mom to Brook (2 years)

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I wish I'd known how incredibly in love I would be with my daughter, howmuch funthis whole process would be, and how amazing our friends really are.

--Francine, mom to Sofia (3 years)

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I wish I'd known that my son would attend his local school, and would havelots of friendswho just accept him and like him for who he is. I wish I'd known howhappy and normal our family would be.

--Naomi, mom to Callum (5 years)

I wish I'd known . . .That it was OK to feel broken-hearted when we first heard the newsThat having a child with Down syndrome is NOT a life sentenceThat my son would have his own agenda for doing thingsAnd that it's a privilege to be his mom.

--Meredith, mom to Brianna (2 years), Emma (5 years, adopted),and Micah (1 year, adopted)—yes, all three with Down syndrome!

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I wish I'd known that my daughter would bring me only happiness, not pain.

-- Destiny, mom to Lily (9 months)

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I wish I had known that my son would have received two awards at the end ofsecond grade:one for achievement in the Accelerated Reader program, and the other forbeing a "Number 1 Best Friend."

--Vicki, mom to Aaron (8 years)

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I wish I'd known that children with Down syndrome just as loveable,kissable, snotty, tantrum-throwing, bubble-blowing, huggable, andmilestone-making as their siblings.

Ava, mom to Daniel (3 ½ years)

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I wish I'd known that I didn't have to be afraid, that it would all be justas it should be.

--Rhonda, mom to Alex (8 years)

I wish I'd known how deeply in love I would be with my son, and howI wouldn't know what to do without him and his diagnosis of Down syndrome.

--Vonda, mom to Noah (9 years)

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I wish I'd known how much joy and happiness Olivia would bring,not only to me and my wife, but to everyone around her.

--Mike, dad to Olivia

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I wish I'd known that she would survive two heart surgeries and continue tothrivedespite leaks within her heart. Her tiny heart was once a great big hole,but it's full of a great big love that we get to experience each day.

--AJ, mom to Janna (3 years)

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I wish I'd known he would be so full of life! He is intelligent, creative,a sports nut—just like his siblings. He's a social butterfly, a love bug, an amazinglittle boy.I wish I would've known he would be more like us than different.

--Jennifer, mom to Brady (3 years)

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I wish I'd known . . .That his sisters would love him so muchThat he would have an awesome throwing armThat he would have lots of friendsThat he would read and love booksThat he would do all the wonderful things little boys do.

--Anjie, mom to Adam (5 years)

I wish I'd known I would look Avery and NOT see Down syndrome.I see her as this amazing, smart little cookie—strong-willed, self-reliant,and cute as a button.She walks around like a little queen in a parade, waving, hugging, andtalking to everyone.

--Kathleen, mother to Avery (3 years)

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I wish I'd known having identical twin boys both with Down syndrome wouldbless our familymore than we could have ever thought. They work together, play together,and show ushow to take life one day at a time, and enjoy every moment.

--Stacy, mom to Caleb and Isaac (2 years)

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I wish I had known that she would get through her heart surgery, that shewould crawland walk and play just like any other kid, that she would be able tocommunicate so well,and that life would be so normal.

--Karyn, mom to Talitha (2 years)

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I wish I'd known that it isn't that hard, and that my daughter isn'tdifferentfrom any other little girl her age. All my dreams for her can come true!

--Kelly, mom of Alexis (2 ½ years)

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I wish I'd known how normal and silly moms of kids with Down syndrome reallyare!I thought they were all supermoms that were like angels in the flesh—now Iknow the truth!

--Cas, mom to Jirah (2 years)

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I wish I'd known life wouldn't be defined by the myths and misconceptions Ihadabout Down syndrome, but instead, it would be as "normal" as normal gets,and my son would fill my life with love and joy beyond comprehension ormeasure.

--Sandy, mom to Lucas (19 months)

I'm actually glad I didn't know much about Down syndrome when my son wasborn.I think if I had, it might have ruined those moments and that connection Ihad withmy son the moment I saw him. I would have thought of the negative,not of the fact that I had a little boy who I loved and was perfect.

--Judah, dad to Jaemen (3 years)

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I wish I'd known the pure joy, happiness, pride, love, and dedication thatmy baby would show us all. I wish someone would have told me that this babywas going to change my outlook on life, make me a better mother to hissiblings, a better wife to his daddy and a better person to this world.

--Carmen, mom to Jaemen (3 years)

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I wish I'd known that it was ok to grieve and scream, cry, vent and beangry. I wish that a facility or network had been in place to reach out tome, instead of the other way around. I wish that every parent coming hometoday could see my girl and how she smiles and loves.

--Amy, mom to Larkin (2 ½ years)

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I wish I'd known not to believe everything the doctors said my child wouldnot achieve,such as breastfeeding. I wish I'd known the immense gratitude my son wouldbring to my lifejust by reaching up and touching my face. I wish I'd known that I wouldnever feel shamefor having a child with Down syndrome.

--Andrea, Mom to Alex (10 months)

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I wish I'd known the new lesson on love that AJ would teach me would fill myheartin a way I wouldn't have thought possible. I wish I had known of all thepositive changes I would see in my other children.

--Ibby, mother to AJ (2 years)

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I wish I'd known I was strong. My husband and I always thought we were thepeople whocouldn't handle raising a child with Down Syndrome. Actually, there's reallynothing to "handle."

--Stephanie, mom to Megan (4 years)

I wish I'd known the stands would erupt with cheers when she got a hit inbaseball,and that her classmates would circle around her with love and protection ifanyone was mean to her.I wish I'd known that "being slow" would mean savoring every step, everypuddle, every blossom.

--Michelle, mom to Ciarra (9 years)

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I wish I'd known that children with Down syndrome are NOT happy all thetime.Darah throws temper tantrums and needs time-outs just like every otherthree-year-old.I wish I'd known that when Darah was first born, she was MY baby. When shewas in the NICU, I felt like the hospital owned her and was afraid to speakup with my concerns and questions.

--McKenna, mom to Darah (3 years)

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I wish that I had known that my broken heart would one day heal,and the love that I felt for my son was the cure.

--Kristy, Mommy to Zachary John (3 years)

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I wished I'd known we were going to be okay, that this one little chromosomewas just a tiny piece of our lives. I wish I'd known that the dreams I hadof the little girl with long dark hair were still going to come true! Thatwhile she may beg for a green Mohawk at times, she's still that little girlin my dreams.

--Leah, mom to Angela (12 years)

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I wish I'd known that this would be such a marvelous journey,and that everything would turn out . . . JUST FINE.

--Jackie, mom to Emily (28 years)

vQuotes gathered from members of three online forums for parents of childrenwith Down syndrome: Downsyn (www.downsyn.com), Uno Mas! (unomas.proboards10.com), and T21 Online Community (www.network54.com).Quotes compiled by Kathryn Soper. For more insights about parenting a childwith Down syndrome, visit the blog sampler at www.giftsds.segullah.org.Thanks to all the parents who shared their experiences in this booklet, andto the owners and administrators of the online forums which bring parents ofchildren with Down syndrome together.